Delicate

To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.

What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.

I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.

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Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.

I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.

I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.

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Handicapped? Really?

One thing every single young chronically ill person will tell you about is the incredibly frustrating battle that comes with having an invisible illness. We are constantly trying to regain normalcy in our lives, but also have to roll with the punches through the symptoms our illness brings along for the ride. For example, I can’t do many of my favorite activities anymore — let alone even just be outdoors in crazy heat — however, I don’t like being different and asking for help, even when I need it.

Today I went to my alma mater to run a quick errand. I wasn’t feeling particularly great, but I told myself that it would only take five minutes and to suck it up and get it over with. I mapped everything out in my head and went to my usual parking space. It’s one of two handicapped visitors spaces, both of which are always available. I sat for a minute to prepare for my walk up the hill and grumbled in my head about how I wasn’t up to my heart racing today so to just take it slow.

As I began my miniature hike, my heart began to thud swiftly and hard (for those of you who don’t know, when POTSies even just go from sitting to standing our heart literally beats as fast as someone running a marathon… No wonder I’m always so tired!). I walked slowly and carefully up the hill and focused on each step so I wouldn’t trip — that’s just because I’m Krista and a little bit clumsy — it has nothing to do with POTS.

I smiled at two young police officers when I looked up, and as I passed by them I heard one say to the other, “Handicapped? Really?” with a snicker.

My heart stopped — then went back to racing even faster than before. For a split second I was shocked, then brushed it off as my imagination. I always feel embarrassed when people can tell I’m different, and I hate having any sort of extra attention. This makes me feel like people are staring sometimes, even when they’re not really paying too much attention. I had a gut instinct, though, that I needed to turn around when I got to the top of the hill. I wanted to make sure my car was going to be OK in the visitor’s spot and that I didn’t need a university parking pass to be there. Despite having parked at that spot a hundred times, you can never be too careful at my alma mater.

Sure enough, they were smiling and looking at my bright blue sticker with a little black device.

Great, I thought to myself, now I have to trek back down the hill to see what’s going on. 

I wasn’t in the mood to deal with confrontation, but I know how crazy our school was about ticketing, so I wanted to make sure I wouldn’t have any trouble when I came back from my meeting. Deep down I knew it was because of the way I looked, though, that the officers rushed down to check my credentials. I quickly realized that I hadn’t been imagining things with the officer’s remark, and that if he was gutsy enough to say that while I was right next to him, he might be confrontational when I chatted with him about my disability.

“Excuse me, can I help you?” I asked.

“We’re just making sure your pass matches up with your car,” one of the officers replied with a grin. “We know people often take advantage of these spots.”

“I have my DMV card, hang on,” I replied shortly. I wished I had called him out on making a snide remark earlier, but I honestly didn’t think a trained police officer would have been that loud and unprofessional about being so snarky. At least if you’re thinking that about me, keep it to yourself and your partner, don’t bring me into your little joke.

I didn’t smile as I showed my pass. Not smiling at someone when I’m interacting with them is actually one of the hardest things for me to do, but I felt frustrated that I was having to deal with this when I already wasn’t feeling great.

“Okay, good,” he replied. “Thanks. We just didn’t want you to be using grandma’s parking pass to get a better parking spot,” he said. “You know — so we can protect people like you who really need it,” he corrected himself.

Honestly, this part of the interaction bugged me a little, but I don’t fault people for saying goofy things like that anymore. I understand that it isn’t normal to see a 26-year-old who is disabled but looks healthy, and a lot of people haven’t even really had to interact with someone like me before.

The thing that bothers me about the whole ordeal was the way they went about everything. I completely agree that they should check to make sure I’m actually handicapped. People who use the stickers but don’t need them should absolutely get in trouble. The way they went about it was wrong, though. I shouldn’t feel like I am doing something bad by using a handicapped parking space when I need one, and I should feel comfortable using the resources that help make my life a little more normal. I already feel embarrassed enough when I have to park in one of those spots at Trader Joe’s and make three trips back and forth to carry $20 worth of groceries to my car without hurting myself. I hate that people stare at me to try and figure out why I am in that blue space, and I hate going grocery shopping with my mom and having people think I am a jerk for making her carry everything to the car by herself. I don’t want to feel like the people who are supposed to be protecting me are also going to give me grief about being a weak twentysomething.

I realize that the police officers were just trying to do their job, but I also know enough people in that field to know that there is a lot of sensitivity training so that they can be professional while they are on the job. I would have had absolutely no issues with them checking my pass — even right after I left my car — however, making me feel uncomfortable by being snarky loudly enough for me to hear was completely uncalled for. In hindsight after talking to a few people about it, the officer more than likely wanted me to hear his comment, as he waited until I was 200 feet from my car and right next to him, and thought he was catching me in the act of something I shouldn’t be doing.

I didn’t write about this to shame the police officer or have a pity party for myself. This is just such a perfect example that you never really know what someone is going through unless they tell you. I look fine, and if you stuck me next to a dozen other twentysomethings you would never guess that I was the sick one. I hope this story helps people be more gentle towards other human beings, as you never know what someone else is dealing with.

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Another reason I wanted to write about this to raise awareness about invisible illnesses is because not everyone with a chronic illness is as bold and open about their problems as I am. A few years ago when I first got POTS, my mom had to be my advocate because I couldn’t even stand without getting incredibly sick. People who are going through things like that should not have any extra obstacles that could easily be avoided, so I think it’s important for me to speak up about my experiences in hopes to better the lives of others who are chronically ill and don’t have someone to advocate for them. A good lesson from all of this is to be kind to everyone you meet, and never make assumptions based on the way someone looks. I am going to be writing a letter to the police department so that they can hopefully be better equipped to deal with others who are like me on campus.

A Very Special Someone

I am going to end up with someone very special.

Do you want to know why I think this? Because I have a chronic illness, which makes dating me worlds more complicated than the average person.

I have been dumped because of things I can’t control — like my skewy autonomic nervous system, which often makes me feel sick or unable to do normal twentysomething activities. People don’t always sympathize with the struggles I go through every day, and I know it is incredibly difficult to see someone you love hurting.

My guy doesn’t just have to be a physical supporter for me, but he also has to serve as an emotional rock when I get frustrated with life. Some days are more painful and exhausting than others, and sometimes I just can’t think straight through the dizziness and brain fog. I need someone who will be patient with me and remember that I have a good heart.

Some days I will be cranky, but I don’t mean anything by it — I’m just not feeling well. So the last thing I need in a partner is someone who can remember how much I love him, even on the hard days. I need someone who will keep in mind that I’m still the same person, even when I’m incredibly sick and some of my best traits might be hidden behind pain. He will need to be able to remember that I still love him with all my heart, I’m just sometimes too darn tired to show it.

People like this aren’t a dime a dozen. Unconditional love is really difficult to find, and meeting someone who is willing to start a relationship with someone who already has complications isn’t always easy. The people I have met, though, who have been willing to go through the hard stuff in the beginning of our relationship are so incredibly special. These are the people who will be there for better and worse, and this is the kind of guy I eventually want to end up with. I guess in some ways I am lucky that I’m not always the easiest person to love since I have no choice but to weed out people who won’t stick around through tough times. I will end up with a 1 Corinthians 13 man.

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Today’s lesson: Take whatever it is that makes you feel different or unlovable, and realize that you are beautifully unique and you are stronger because of the struggles you have gone through. Realize that not everybody will love you with them, but the right person will absolutely love the entire package you have to offer. Just because you have a disability, baggage from your past, or struggle with something today does not mean you will never find love. It just means you need to wait for someone really, incredibly special to be a good fit for you. People like us kind of lucked out in that regard, I guess, because we can’t settle for an ordinary love. We have to be patient and wait on one that will hold the test of time and make it through the crazy curveballs life throws at us.

My Shade Of Blue

I have a disability.

Growing up I never would have thought I would hear those words come from my lips. I was always an exceptionally healthy individual; I exercised very regularly, ate well, and excelled academically.

Even in the very worst points of my illness I wasn’t able to comprehend that this word is attached to me now. I don’t have a normal life anymore, and I do need a lot of help with tasks that most people my age wouldn’t even think twice about because they are so mundane. I have to tell myself this over and over again to understand that asking a friend to carry a “heavy” water bottle will not make their arms hurt for days after or that having someone drive 30 minutes to see me isn’t going to bring them any sort of physical pain like driving more than 15 minutes down the road does for me. This is a difficult concept to grasp after living the way I have been for three years now.

When I first got POTS it came with an electric blue handicapped parking pass. This was to accompany me everywhere. I took it to my doctor appointments and to the gym — the only two places I could muster up enough energy to go to when I first fell ill. I was determined to get better, and although I wasn’t able to go out with friends, I would force myself to go on these necessary trips with the hope of having a normal life again one day.

My mother lovingly called my handicapped pass my “VIP pass,” but my brain couldn’t comprehend that this was something that was okay for me to use. I was so used to being able to do everything by myself and having an independent lifestyle that when my working body was torn away from me I didn’t know how to react. I felt guilty using the pass, but when I didn’t I would often feel too dizzy to walk to the back of the parking lot and someone would have to come pick me up. I had moments when I had to lie down in the middle of the parking lot so I wouldn’t pass out on the hard concrete and get sent to the hospital again because of a cracked head or something. I remember my heart freaking out on me so many times while I was merely trying to decide on something like whether I wanted to try vanilla or plain almond milk. I would lie down in the middle of the grocery aisle and put my feet on a low shelf to get the blood flowing back to my brain (Hence, the “postural” part of POTS). The girl who was literally passing out from just standing up felt like she couldn’t label herself as disabled.

A lot of this had to do with my chronic optimism and hopefulness that I would one day be better. The other half, though, had to do with the way I thought about disability. The handicapped pass says it all with the picture of a wheelchair as the symbol for the disabled. I do not look like someone who has a physical disability. I look like an average run of the mill girl you’d see on a college campus or studying at Starbucks. If anything I actually look like an athlete, as I am tall, thin, and wear my sneakers almost everywhere I go (They’re a lot easier on my knees than any of the cute boots or heels I loved wearing just a few years ago). I do not look sick. You absolutely cannot see my pain; even doctors have to feel different parts of my body or rely on complicated tests to see that I’m not just an average twentysomething.

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I’m always surprised when people tell me they’re “glad I’m feeling better” when they see pictures from photoshoots or nights out with my friends. A picture might be worth a thousand words, but without the context behind the photo it’s impossible to get an accurate story. The story behind this photo that my friend Audrey took would be about how blessed I felt to have a “good day.” It would include that I had a hard time turning my neck for some of the photos, and trying to overlook the sharp pain in my arms and shoulders so that I could have a fun day with my best friend. Despite some pain and difficulties, this is an overall happy photo for me to look back at.

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This photo tells a different story. It was taken two years ago by my cousin Kristin. A bunch of my relatives were visiting for Thanksgiving and since Kristin is a photographer, we decided to take a few family photos outside. I was freezing and wore a giant puffy coat until we got to the bridge across the street from my house. My head was spinning, so after a few shots I shivered all the way home where I promptly went to my room to take a nap in hopes of sleeping off some of my POTS symptoms. I didn’t get to help make the dessert — one of my favorite Thanksgiving activities — and I missed out on a lot of quality family time because I wasn’t feeling well enough to sit around and visit with everyone. I stayed in my room much of the visit, sleeping or watching Netflix, as there wasn’t a comfortable place for me to sit in the living room with my family. Even sitting up can be exhausting with POTS, as the blood rushes away from my brain and makes me dizzy.

I still don’t think of myself as being very different than anyone else. I have been sick for so long now part of me feels like my life has always been like this. I don’t really remember what it’s like being able to go to a store by myself without planning where I can get water with electrolytes, as I cannot carry my own water bottle for more than a few minutes at a time. Sometimes I feel like the rest of my life was a beautiful dream; I remember so many of the good parts of not being sick that I almost glorify regular life now. I think back to being able to go clubbing with friends and feeling carefree rushing around the streets of New York City. I remember how amazing running felt and miss the burning in my lungs from training out in the cold, crisp fall weather.

I remember how life was before I got sick and sometimes wish I could go back and fully enjoy the time I had. I wasted so much time worrying about the future and my plans that I didn’t even realize that whether or not I like it, I might not be in control of my own life — at least to an extent. I can’t work, and I act like going to doctor appointments as often as a full time job is a normal thing. All of my college dreams were shattered the day I got sick. I still do dream of being better one day and being able to write for a living. I want to be independent again one day, and I would love to be able to train for even just a 5K.

You can’t see my disability, but it’s there every minute of every day. Having POTS has been a great lesson to me that just because someone looks healthy or looks happy doesn’t mean that they are. Looks can be deceiving. You never really know a person until you hear their story.